Please forgive me. It's 4am as I write this right now. I've only had 2.5hrs of sleep. I'm at my wits end and don't know what to do or how to handle this.
Breif backstory:
I am 26, my mother will be 54 this month. She has some form of dementia, it could be FTL or Lewy Body. She fits some of the symptopms for both, but not all, so she's in a grey area right now and will do testing and see a neuro again in a few months. Because of there being a high chance of it being Lewy body we can't risk putting her on anti-psychotics.
****the story****
She's not allowed to cook, I keep the stove's burners in my room when I'm not cooking with them and the oven is locked from her controls as well. That's not even a part of tonight's issue, but it needed mentioned.
She's very paranoid at night. To the point I was questioning my own sanity. I've had a camera put in to face the front door, kitchen opening, and living room window. I've explained and showed her how the alert system works so I know if any stranger has been in the house. This was due to her calling the patrol security and telling them someone was in our house whenever I left to visit my dad in a town three-hrs away.
Then she started doing it even when I was home.
I tell her every night before she goes to sleep to come and get me whenever she thinks she hears something. I sleep with the house phone in my room so she can't make calls without asking me first (due to her calling every number she sees on tv, or medical insurance companies over and over again, this change has only been within the past month).
I allow her to have a broken cell phone that's only function is a clock and emergency calls due to it keeps her in a manageable mood.
I thought since I took the house phone away, she would come to me if she was being paranoid so she could use it. Tonight, for the second time in a month (but the first time without the house phone) I woke up to police talking to her in my house, and leaving five-seconds because they didn't find anything. Imagine hearing a man's voice when no men live with you, at three in the f**cking morning.
I was so mad after he left, I yelled at her until I cried (I normally try to keep a level head and understand it's her paranoia), and she never batted an eye. She said she smelt someone cooking toast in the kitchen and wanted the police to get him, but they ran away as the cops pulled up. She even had me touch the oven (it was cold I had cooked fries earlier in the night), but she thought it was warm.
I took the cell phone from her, only after promising to give it back in the morning, otherwise I could sense she would fight me for it. I don't know what to do. Do I keep it, give it back? She'll act out if I don't give it back.
To be completely transparent, I live in a state where weed is legal, and I do smoke it only at night to help me sleep and keep my insomnia at bay. I never smoke it in same room as her and I use filters for the smoke), I've never let her had any, and I always wait until she's in her room for the night. I can't make her sleep, but at least I was able to keep her in her room. If she hadn't had the cell phone this wouldn't have happened, but I once again put too much trust in her that she would come get me first.
When I asked why she hadn't she said she didn't want to wake me.....
Anyway, even though it's legal, I don't want cops walking through my house when I know everything is fine.
I'm suppose to go the 19th with my step-sister to visit our parents in the town three hours away, since it's a long drive it makes sense for us to spend the night due to not having much time with them. I would be back around 12pm on the 20th. I used to feel comfortable leaving her here for one night. But with her call the patrol and now police more often, I don't know what to do. I haven't seen my parents in over a month and I'm crying right now because I may not get to see them.
I'm going to ask her sister (who won't do anything in the way of care for her. I have to beg for her to take her for three hours to go see their sister who also has dementia. Otherwise she'll go without taking my mother.) if she can spend the night that day.
My only other option is our neighbor, but she has her cousin living with her at the moment and he creeps me out, he's always trying to hit on my mother.
We're currently fighting with Mediciaid to get her back on it. They switched her over to Medicare/Atena and are jumping through government tape. She doesn't make enough from SSDI to afford AL on her own, nor can I afford it right now either.
Do I not sleep normal hours? Stay up until the sun is out when she starts to act normal again?
There's no reasoning with her. The men who come in the house can go undetected by the camera and leave the only open exit right in front of police. They want to steal items like blankets and used makeup but not the flat-screen in the living room. I can't take this stress anymore.
You went to a specialist (the neurologist) for your mom, was that a referral from the PCP (primary care physician?)
I am going to try and look this up, but want to add that other medical causes should be researched by getting your mother a full physical workup by the PCP, including blood tests for STD's. Request them, they are not routine. This is not to insult you or your mother, and I could be wrong, but I believe STD' can cause mental and neurological symptoms as well. Anyone else know about this?
A ~ I have to tell you that this is exactly what was going on w/ my dad when I first took him on 5yrs ago. The 3 kids he imagined didn't hurt him but they sat on a chair or the window sill and just stared at him with blank eyes and creepy smiles on their faces. They would never talk to him or say what they wanted even though he tried to talk to them.
I remember standing in the hallway outside of his door of his apt and hearing him carry on a one sided conversation w/ them. It made the hair stand up on my arms.
Even when I was in the room w/ him and he'd say there they are in the corner and I'd walk over to the spot and say "See Dad. No one here."
He'd say "They just ran to the other side of the room. See! There they are!"
They were so real to him. No talking him out of it. "Dad," I'd say. "There is no one here in the room with you."
"I know you say they're not there ~ But They ARE!" was his response every time.
I would just hold my breathe everyday waiting for the next shoe to fall. And fall it did.
Same as you, the delusions were not there during the day much, at first. They were terrible at night. And they got worse and worse as the months and years went by.
Whatever you can do to get her help and you out from the pressure of such weird behavior ~ I hope you find it. You're too young to take on so much of this illness.It is such an overwhelming experience and wears you out.
Again ~ It turned out to be the ammonia buildup in his system that was attacking his brain. Horrible! And then a nice big side dish of LB Dementia.
My Best ~ My Prayers ~ To You
You are only 26! We all feel for you. We don't want you to destroy your life over this!
I went thru this with my Dad.
I suggest you get on that waiting list asap.
Take her to the hospital for evaluation. Get doctor to help place her. The crap about saying how brave you are to deal with this and then, in the same breath, refuse to assist you in a placement? That is crap, don't stand for it
And, you get the summa cum laude of stepping up to the plate. You are a hero. It doesn't even seem to have crossed your mind that your being handed sole responsibility for your mother at your age is not fair and not reasonable.
Less happily, your mother is not getting the high level professional support she needs. If you weren't there to care for her maybe she would, and how ironic is that?
I finally got an answer this morning when I talked to her. She said the men don't want anything, they just come in and peek at her through her bedroom door. So they don't want to hurt her, me, steal anything or do anything, but stare at her.
She can't live on her own she does need some level of supervision. I won't allow her to be alone her for extended periods of time anymore. Just quick trips to the store when she's napping. She's never had delusions during the day. I have a neighbor who can watch her some nights, and her sister for extended periods like when I go see my dad.
I don't know how much a psychiatric assessment will help, she's really good about saying the right things, but it's worth a shot. I'll call her neurologist about that and see if he can set something up.
As for support, I don't know if I would qualify. I don't make enough to afford a $3k AL a month, plus my rent and bills, but I also don't make nothing either.
Right.
EITHER your mother is not a person of interest to APS, not of concern to the police, not diagnosably bananas - in which case she's a competent adult and NOT your responsibility, and you can leave her alone and go out of town whenever the fancy takes you, and you can let her have her phone and call 911 every ten minutes daily if she likes and see how fast that gets a reaction from the services concerned ...
OR your mother is incapable of living independently, in which case you are entitled to receive support with her care and she is entitled to a proper psychiatric assessment with a result at the end of it.
But the police and APS and the neurologists and Uncle Tom Cobley and all can't have it both ways.
What does your mother think is wrong, by the way? I don't know why I didn't think to ask that earlier - what's her view of how things are, and how she's living, and what's going to become of her?
I contacted her mentally-well sister this morning. It seems she now realises how bad things are. She only ever sees my mother on her good days, so she has never seen her while she's in one of her delusional states or simply not responding to her environment. She says she going to try and help me find her a place for her, but I'm not holding my breath.
My mother started showing symptoms that something was wrong at 46-47 when she had an affair and moved to New Orleans for a week before realising the person wasn't a good person and came back. Her then partner (not my dad) took her back. She then got into two car wrecks (two days in a row, wrecked both cars they had). She then started showing signs of being incontinent.
She saw her first neurologist who was the head of his hospital for Dementia and Alzhimers, and he told her it was all in her head and to see a therapist to get past the block. Even though her mother was diagnosed with dementia in her late 50's and would later die from ALS complications (still not sure if she had ALS, it was the 90's).
She then came to live with me, and I had her see a new Nurologist who looked at her old scans, took new ones, and had her do cognitive testing. She diagnosed her with FTLD.
Fast forward almost two years and we see a new neuro. He has her do everything again. This time the neuro psychologist (who preformed the cognitive testing) said he believed she had Lewy Body.
The neurologist said she isn't progressing fast enough for FTLD and she only has a couple of the symptoms of LBD. He said to come back in January or February for more testing and possibly an official diagnosis depending on what everything shows.
In your opening paragraphs, you state that your mother is 54, then segue into the traumatic issues you're both experiencing.
Then later you write that:
"I'm suppose to go the 19th with my step-sister to visit our parents in the town three hours away, since it's a long drive it makes sense for us to spend the night due to not having much time with them. ... I used to feel comfortable leaving her here for one night."
So, are you visiting your stepmother and father, but caring for your mother, in the same home? I'm a bit confused.
Thanks!
I just was thinking kidneys because it's all starting to fall apart in front of my eyes now. He is retaining so much fluid now because his kidneys can't keep up and his whole system is failing.
So you might wanna check the liver route if they haven't already. XOXO
I just remembered something while I was putting on my warpaint for the day, AS.
My dad also had hepatic encephalopathy due to no fault of his own. A rare blood disorder attacked part of his kidney function and that's when the delusions really were BAD!!! He was on lactoluse for years to keep the ammonia out of his brain and Rifaximin for his bowels to keep bacteria away.
ASxOren, I hope you can get some treatment like ImSoTired1 did for her dad before you completely burn out. I don't know how you can do it. Can you also let the police dept know about your mom's mental illness (of whatever diagnosis) and have them call YOU to verify there is an issue before they send a squad car out? I'd try that.
My dad was diagnosed w/ LB Dementia ~ Finally! I was running him all over town and Drs for years. When I finally got him into a Geriatric Psychiatric Dr and after tons of tests and years of waiting, they said he has had LBD for years.
The medication has helped quite a bit w his delusions, and you ain't seen Delusions till you've seen my dads delusions. Every night he saw 3 kids trying to kill him. they'd run down the hall after him, come out of the closet for him, climb the outside of the building and come in thru the window for him.
He was calling the police and pulling the fire alarm every other night. He was walking out of his independent living at night to try and find where they were coming from; digging in the dirt along the fence to find their tunnel. Thank God the staff at his place loved him cuz he is just so charismatic and cute, but the night receptionist could only take so much.
The staff was calling me every night to come and get him or they were gonna call 911. I had him in Indy Living w/ an aide that came in during the day to help as this was a cheaper way to go and I was trying to make his $$ last. I also took him out for day trips everyday for about 4~5 hrs and that helped him during the day. But the picking him up at 7pm and taking him to my home til 7 the next morning was getting tiring for us all.
FINALLY, my appt date came up. Bottom line to a very long story is we started trying him on different meds that helped w/ the delusions of LB. Risperdal~Risperidone. Same thing. It helped so much w/ the delusions. It took a long time to get into his system as it was raised little bits at a time each week or so. The 3 kids are gone. No more phone calls at night. BUT he still sees some harmless delusions like a bunch of birds outside his window or a dog or two in his room. This I can live with!
I know all drugs work differently for everyone Blah Blah Blah but he tried Gabapentin and that was BAD for him w/ his LBD. I can't remember the other ones but see how risperdal might work if you can get a dr that thinks it's ok for her.
I feel so bad for you cuz your mom is just so young for LBD. They said my dad prob had his for years but was able to hide it very well by his charm and great easygoing personality. Plus he was a gypsy his whole life and didn't stay in one place long enuf for someone to figure out the beginnings of LBD. He's gonna be 88 soon and I have had him now for about the last 5yrs.
It is so disheartening and tiring. He just fell last month and broke the ball off his femur. The Drs wanted to let him go as he is down to his last days they're thinking, but a broken bone isn't a life taking ailment. Not like kidney failure or heart attack. So its been repaired and now he is wheelchair bound. I took him out of his rehab for a root-beer float the other day and you would've thought it was the nectar of the God. He is so thankful for the sun on his face and the turning of the leaves. He has no idea that he won't be walking anymore(LBD) so he asked me to look up the times of the Tango lessons offered down the street from his AL.
You are so young and this will pull you down so fast. Get some backup plan going w the help from the gals on this site and drs and social workers cuz if it is LBD you got a LOOOOOOOOONG haul. Much love your way.
I think she is asleep now, she hasn't come out of her room since I put her in there. I'm probably going to have to give the phone back because she won't relent in attempting to get it until I do. I tried to disable the 911 feature, but it's impossible by law.
I had a case with APS open a few years ago when she acted out violently. They did several home checks and closed the case due to no further incidents. They weren't able to offer help in getting her placed, obviously.
In order for her to be taken to psychiatric care she HAS to act violent in front of the cops. Trying to record it would be impossible without head gear. She's hands on and flips on a dime. In 5 secs she's fine again and telling me it won't ever happen again. I burnt out a long time ago. Everything I've tried ends up in a dead end.
What investigations have been done? Did she have a CT or MRI scan of her head?
These are pretty heavy-duty symptoms your poor mother (and poor you too!) is experiencing - I think I'd agree with trying the 911 option when she's next in the middle of one of her florid moments. I mean, she's only 54 - aren't there all kinds of possibilities that need to be ruled out before we jump to the dementia conclusion?
Have you considered calling 911?
What does her doctor say about the evening paranoia and how to treat it? You are going to burn out fast from lack of sleep; doc needs to know that this has to get solved, and quickly.
Have you considered the "nuclear option" of calling 911 during one of these episodes and having your mom taken to the ER? Is she wearing a Medicalert bracelet that says "NO ANTIpsychotics"?
It really sounds to me as though your mom needs to be in a complete care setting (like a hospital or psychiatric unit) to get a workup for whatever is going on. Once she's admitted, you have the services of the hospital social workers to get her placed.
Are you working with an eldercare attorney to get her recertified for Medicaid?